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Disorders of Sex Development: De-Queering the ‘I’ in LGBTQI2-S

This entry is part of the CFHSS’s VP Equity Issues series on issues related to LGBTQI2-S (lesbian, gay, bisexual, transgendered, questioning, intersex and Two-Spirited) peoples.

In 1993 activist Cheryl Chase founded the Intersex Society of North America (ISNA), kick-starting what would come to be known as the intersex rights movement. Since then, the word intersex has become more controversial, more contested and more divisive than ever before. First used in 1917 by biologist Richard Goldschmidt to refer to those conditions that gave rise to atypical sex anatomy – or what was generally referred to as “hermaphroditism” – the word “intersex” was never officially adopted or consistently used by physicians, but only gained mainstream recognition after being reclaimed in the 1990s by activists seeking to dispel the stigma associated with these conditions and the vague, demeaning and often sensationalist term “hermaphrodite.” As with many of the terms lumped under the ever-widening LGBTQI2-S umbrella, “intersex” has always been at the centre of heated debate.

Which conditions counted as intersex conditions? Must a condition give rise to ambiguous genitalia or genitalia deemed to require surgical correction for it to be an intersex condition? What then of those individuals whose genitals looked “normal,” but were at odds with other components of their sex anatomy (such as their chromosomes, gonads or reproductive organs)? Did they have intersex conditions? Or what about those conditions that might give rise to genitalia deemed to require surgical correction, but who had “normal” hormone exposure in utero and otherwise typical sex anatomy? Were they intersex conditions? And beyond all of this, what did it even mean to claim that one was intersex? Was there even such a thing as an intersex identity and if there was, was it a queer identity? Did the “I” really belong in LGBTQI2-S?

These many years later, not only do all of these questions remain, but a new, much larger question overshadows them: Should we even use the term intersex at all? Many, including the former Intersex Society of North America (now the Accord Alliance), would rather we not.

Like many other intersex activist groups that popped up around the world during the 1990s, ISNA drew its early energy and rhetoric from social and political movements for women’s rights, gay rights and civil rights as well as from queer and feminist academic challenges to biological determinism, sexism and medical authority. Many of these groups engaged in a two-pronged critique. On the one hand, they took on contemporary medical practice: holding protests at medical conferences as they called into question the necessity and timing of genital surgeries, the presumed naturalness of physical sex dimorphism; the heterosexism underlying treatment recommendations and outcome analyses; and defending the dignity of those with atypical sex anatomy. On the other hand, they engaged in a larger social and political project, making visible the existence and experiences of intersex individuals through videos such as Is it A Boy or a Girl? and Hermaphrodites Speak!

As with many activist organizations, ISNA’s strategies changed with time. Many members became increasingly convinced that the best way to improve the lives of individuals with intersex conditions was through the creation of better medical models of treatment, something they felt was best achieved through collaboration with physicians rather than through a more confrontational activism. Also, they reasoned, it might be best to escape the negative stereotypes, the increasingly messy identity politics, and the association with queerness that had come to haunt the term intersex and shift focus to the concrete medical needs of individuals with these conditions.

Many affected individuals and their parents found the term intersex offensive, arguing that it sexualized individuals with these conditions, and falsely implied they have no clear gender identity, or have a queer identity that they do not claim for themselves. Besides, they said, it was misleading to assert there was such a thing as a intersex identity or community, for while there are many online communities of individuals with intersex, there are no brick and mortar communities of those with intersex conditions living together – and those who do belong to these virtual communities tend to come together fairly infrequently and primarily for meetings about political consciousness-raising.

In 2003 ISNA created the Disorder of Sex Development Consortium, a medical advisory board chaired by feminist thinker and historian of science Alice Dreger to begin the work of advocating for the adoption of the diagnostic label “Disorder of Sex Development” (DSD) and collaborating with physicians to create a new patient-centered model of care. It also began the work of distancing itself from the term intersex and its own more overtly political past. In 2006, due in large part to the work of individuals associated with the ISNA/Accord Alliance, the Pediatric Endocrine Associations of the United States and Europe published their “Consensus Statement on Management of Intersex Disorders” in the journal Paediatrics – a special article announcing both a new patient-centered treatment model for intersex conditions (one in which biology or biological factors would gain a new centrality in determining optimal sex assignment) and the adoption of the term “disorder of sex development.” And in 2008, the Intersex Society of North America quietly dissolved and reformed as the Accord Alliance, a group which identifies its mission as working to “promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders,” which they identify as “patients, parents and clinicians.”

Reaction to the recent changes in the direction of ISNA/Accord Alliance and the clinical treatment model for intersex conditions has been mixed, with the majority of the debate focused on the adoption of the label “disorder of sex development.” While this new terminology has pleased many physicians, patients, parents and even some academics, many are angered by the adoption of the pathologizing language of disorder. Some have argued for alternative diagnostic terms that carry a less stigmatizing, less correction-demanding tone, such as “variations of sex development” or “divergence of sex development.” Others simply refuse to give up the word intersex.

In the introduction to her 2009 edited collection, sociologist Morgan Holmes acknowledges the taboo she is breaking titling her collection Critical Intersexin the era of DSD. She writes, “this collection asserts that we (whether we are scholars, intersexed persons, activists or some combination of these three) are not yet done with ‘intersex,’ even as we seek to turn a critical gaze on ‘intersex.’ The implicit imperative in the title of this collection is that it is too soon to accept the language of disorder wholesale and that, in fact, a critical value remains in the use, deployment, recognition and interrogation of intersex.” And if the plethora of online support and activist groups explicitly asserting their resistance to DSD are any indication, there are indeed many people who are not yet done with intersex.

Why are so many unwilling to give up the label “intersex”? For some, identifying as intersex means identifying as having had certain experiences as a result of having a body deemed non typical for a male or a female– experiences which, for better or worse, have influenced the way they see themselves and shaped their experience of their lives. For others, identifying as intersex is a political statement, signifying a critical position towards the presumption that intersex conditions are necessarily pathological and in need of “fixing.” For others still, identifying as intersex is a way of laying claim to a queerness that has come to be associated with the term that DSD proponents would rather disavow. And while I do agree with proponents of the DSD nomenclature that we harm people when we impose upon them an identity they do not claim for themselves, I also think we harm them when we fail to recognize as legitimate or real the identities they do claim.

Furthermore, the fact that the move from intersex to DSD is partially driven by the desire to reassure others – in particular, parents – that those with intersex conditions are heteronormatively gendered should be cause for great concern. It is true that many children born with intersex conditions will be “normal” boys and girls and grow up to be “normal” men and women. But some will not. Some will identify as intersex, both in spite of and because of all the messy identity politics and queerness it entails. Some children born with intersex conditions will even come to identify as trans, as queer, as lesbian, as gay and so on, just as some of all children are wont to do. Should we really be trying to reassure anyone of the heterosexuality or the gender normativity of others – be they parents of children with intersex conditions, parents of children without intersex conditions or anyone else? If we really hope for things to “get better”, perhaps we need to consider the value we give to being normatively gendered and heterosexual when we assert that it is something others want, need and deserve to be reassured about.

Catherine Clune-Taylor is a doctoral candidate and lecturer in the Department of Philosophy at the University of Alberta. Email: clunetay [at] ualberta [dot] ca.